~ gettin' by on a wing and a prayer

Monthly Archives: February 2015

Yesterday a new Trader Joe’s opened just down the street from me (walking distance, people, walking distance). So of course I had to stop by. As I was wandering up the aisles I was suddenly transported back to Portland. The good part of Portland. The part I loved. And it struck me, once again, as it has so frequently in the last six months, that this is the place (cough, sorry, couldn’t resist) where we are supposed to be. We meaning me and my family. And this place being Utah, not Trader Joe’s. If any of anything that is happening right now were to be happening in Las Vegas… I would be lost.

Last Thursday was The Appointment. The one with the psychologist. The one where we’d get a diagnosis. If you’re a regular reader you’ll remember that I was slightly uncomfortable with that whole concept but as with most things in life it turns out that I shouldn’t have been. He was wonderful. He has been working with spectrum kids, as he referred to them (which actually I quite like and may adopt for my own personal use), for 20 years. It’s all he does. It took him all of about 15 minutes of listening to my concerns and asking me questions, all the while observing Louisa, to indeed confirm our suspicions. She’s definitely on the spectrum. Watching him watching her I had noted an odd questioning look on his face and was thinking to myself “seriously dude? you’re not 100% sure?” but he was. He was merely trying to figure out exactly where she belongs. If you’re at all familiar with ASD you’ll know that in 2013 the DSM-V came out and changed the landscape of autism entirely. What used to be four separate developmental disorders are now lumped under the umbrella of autism spectrum disorder. As with lots of things in this world there are both pros and cons to that. I’m not here to debate them because personally I don’t care. For diagnosing purposes it makes things a little bit easier, according to the psychologist. It used to be that you would have to figure out which diagnosis to give; now if someone meets the criteria for ASD, they meet the criteria and thus, are diagnosed. It is, however, helpful for parents (and healthcare professionals) to know where someone fits because then you know better what to expect.

In Louisa’s case he could figure out two things: 1 – she’s mild (huzzah!) and 2 – she doesn’t have classic autism, a.k.a autistic disorder (which is a good thing). What he couldn’t figure out was whether she is high-functioning autism, Asperger’s or PDD-NOS. I had thought that she was out of the running for Asperger’s because they typically don’t have a speech delay but he said that’s not actually the case and that high-functioning autism and Asperger’s have so much overlap that some people have just started considering them the same thing. He wants to see her again in a year because at 3&1/2 it is often easier to tell where exactly someone fits, but the takeaway point is that she is mild. With lots of various therapies she has a pretty good prognosis.

And just like that most of my anxiety (read as: freaking the fuck out) ceased. Obviously we still have a long and probably rough road ahead of us, and the future is still anybody’s guess, but he seemed so optimistic that I guess it rubbed off on me. Or maybe just finally having an answer after six weeks of wondering, worrying, sleeplessness and heartache took me out of holy-shit mode and put me into WE-CAN-TOTALLY-DO-THIS-GUYS mode.

We are so lucky. I know. My daughter was just diagnosed with autism and I’m saying we’re lucky. But if I’m looking on the sunny side of things which, as you know, I am so good at (PAH HA HA), things could be so much worse. We could still be in Nevada (no offense, Nevada, you just didn’t do it for me). This could have happened while I was in the hospital already worrying myself sick about Simon. She could be so much more severe. Plus, we caught it fairly early. We have so much time to do so many things.

As it stands, there is a wonderful school here for spectrum kids. It has a waiting list but she’s only 2&1/2 – we’ll probably eventually get her in. And if not there are many other available resources. For us and for her. There will obviously still be bad days and he told me lots of things that both scared and saddened me but he also told me things that made me feel very optimistic about our hazy future.

“How are you?”, people keep asking (and by ‘people’ I mean ‘my family’ because I don’t really talk to anyone else). “Uh… fine”, I answer them. Because what else can I say? Let’s see… I’m sad, angry, confused and scared. Not to mention I’m feeling more than a little bit… I don’t know what the word for it is. What’s the word for feeling like everything that is happening to you is total bullshit? That none of it is fair and why is it happening to you and your family instead of somebody else? Whatever that word is, I’m feeling it. Also completely and utterly exhausted because of all of the things. The autism, the 10-month-old kid, the part-time evening job, the lack of sleep, the back pain, being fat, etc.

Monday was yet another appointment for yet another speech evaluation for Louisa. Her speech was already evaluated by Early Intervention. But half of the evaluation for autism by the people who are evaluating her for that (honestly you guys, I have looked it up at least 30 times and for some reason I just. cannot. remember. it.) was another speech evaluation. And… her speech is… none…basically. I don’t mean she doesn’t have words because she still has a few and sometimes she will still use them but the words she does have are essentially useless because she doesn’t have any functional language. Like, she doesn’t know any verbs – especially any helpful ones like eat or drink or NO I DO NOT WANT THAT, I WANT THIS, WHICH IS WHY I AM THROWING THE WORST TANTRUM IN THE HISTORY OF TANTRUMS. According to the evaluator her expressive and receptive language, her communication/interactive skills and her social skills are severely deficient. Which, in case you didn’t know, are all of the things that one would expect to be nonexistent in an autistic person. But she can’t diagnose! She’s just evaluating her speech! We’ll have to wait until Thursday to see the psychologist for a diagnosis! She handed me about 20 different packets about autism and/or how to help kids learn to talk and sent me on my way. And PS: Can I just say… taking my 2&1/2-year-old child to a psychologist…I don’t even know. I’m apprehensive about it? I guess?

Let’s just move on. Apparently that’s one of the things I can’t even deal with right now. There are a lot of them. I’m not sleeping. Mostly because of Simon but also because of not being able to. So I’m completely exhausted. And keep forgetting things. And dropping things. And bumping into things. Also I have a permanent eye twitch. And when Louisa has one of those gigantic endless tantrums (which in the autism world are known as meltdowns) I basically have to take deep cleansing breaths and not freak the fuck out because I so want to freak the fuck out. I’m not kidding about how bad they are. It’s almost comforting to know that there is a reason other than she’s just a jerk, you know? Like, my kid isn’t just a gigantic asshole, she’s either A – experiencing some sort of sensory something or other (I don’t even know any of this stuff yet – more reasons to panic) or B – so frustrated by her lack of communication skills that the only thing she can think of to do is shriek/cry/kick/punch/throw herself on the goddamn floor and writhe like she’s possessed. That was how I spent my Saturday. Her throwing basically an hour-long fit, on and off. Part of it was in the parking lot at Target (because brilliantly we thought that maybe getting her out of the house and walking to Target (it’s literally a two-minute walk through the back fence of our parking lot) would help. We were so very wrong, obviously). In the midst of all of it my husband was getting a cart out of the corral and somehow managed to tear his calf muscle. I don’t know how he did it, he doesn’t know how he did it, but he did. And suddenly he can’t walk at all, I’m trying to simultaneously push Simon in his stroller and hold/comfort a SCREAMING-SO-EMBARRASSINGLY-LOUD Louisa and… it pushed me over the edge. I was that lady hissing things at her screaming child. Things like ‘stop it right now! I am so sick of this bullshit!’. It wasn’t good. None of it is good. Have you ever read/heard/seen that quote about how God/The Universe doesn’t give you more than you can handle? Or that this is the life you were meant to have because you totes got this, dawg? Or some variation on that theme? I saw that somewhere the other day and wanted to punch someone in the throat. You guys. I can’t even handle this. The only reason people can handle things that they have to handle is BECAUSE THEY HAVE TO. Like, I don’t really have a choice. I can’t just trade in my life for a different one that’s easier. So yeah. Just so you know – don’t say that to me right now. Or probably anyone else who is having some sort of difficulties.

So. How am I? Um, not good? Terrible? Hovering right on the edge of totally losing my shit?

I need to somehow find the time/gumption to move Simon into his crib and also convince him to start taking bottles. I only have two more months of nursing, thank God. I am so sick of it I could scream. I love the kid. OH SO MUCH. He is so smiley and cute and wonderful. But I would like my body and my bed back. It’s my fault for co-sleeping and for being a rabid breastfeeder, and I’m still glad I made those decisions, but I’m done now. Also, I maybe need some drugs. All I have to do is find a doctor, make an appointment at some convenient time (read as: never because what do I do, take my screaming toddler and highly mobile soon-to-be toddler with me?), go to that appointment, get a prescription, fill the prescription… you get the point. I sat down to call my insurance company for help finding a doctor today and Louisa started screaming and I couldn’t even deal with it. I hung up. Why does everything have to be overwhelming? This is America, can’t we just get antidepressants in a vending machine or something?

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